Hya
I was diagnosed 6 yrs ago,I have problems with my sinuses,ear problems,general fatigue.
I tend to have a flare up at this time of year,numerous infections,am on Cellcept to try and manage WG
Was admitted into hosp 2 weeks ago because WG had caused severe narrowing of the windpipe,had to have it dilated (Broncoscopy using a baloon) am due back in Hosp to check if it has kept dilated,if not got to have a stent inserted.
Because of this crisis it was highlighted that i should see a Rhematologist and to have a blood test to check my ANCA levels.I feel really let down with the Medical profession because they dont seem to know what they are doing,i know it is a rare condition but it is very worrying as to what the future holds,
Has anyone had a similar experience
Thanks annette